Chronic Pain Patient Survey Continues to Attract Response

(The National Pain Report has been actively promoting a survey of chronic pain patients for over half a year which is now being used by Dr. Lewis in meetings with federal officials. If you haven’t yet filled it out, you may do so here.)

The instrument is steadily gaining respondents as conditions of care deteriorate. As of 2-24-2019, 3811 persons have responded since the survey instrument was opened in May 2018 in response to a call out for patient experience. Of these, 95% are persons with 6 or more progressive diseases involving multiple body systems, who experience pain that they characterize as intractable or always present. A large number of these conditions are classified as rare diseases for which there is not cure at present.

Terri A Lewis, PHD

Every state is represented in the data. The majority of respondents are women who have been dealing with their diseases for a long time, some from birth, and many from childhood. The onset and progression of multiple disease and injuries is apparent in the descriptions about how their chronic pain generating conditions developed. In some cases, injurious treatment exposure increased their burden of disability.

We know that complex illness places a strain on family and personal resources for the long haul. A little more than 3% are care partners who can clearly elaborate upon the increased burden of care imposed by regulatory failure. Palliative care is largely unavailable to respondents in most states. Frequently, physicians fail to distinguish the difference between palliative care (which is designed to sustain and coordinate care) and hospice or end of life care coordination. A little more than 5% report that their combination of diseases will eventually require end of life hospice care coordination, with family members picking up the slack for chronic care across the interim.

The balance of reporters completed this instrument as helpers or people serving in the role of health care professional. People in the helping role describe their extreme frustration at having their hands tied by regulatory impediments that fail their patients and impair their ability to properly treat. A number of health care providers completed this instrument as members of the helping professions who are themselves dealing with chronic pain generation and disability on a daily basis.

In future reports, we will provide some preliminary results from the survey as we continue to promote the survey and encourage chronic pain patients, their family members, doctors, nurses, to lend their voice to this important effort.

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Ali

This has become a travisty of injustice by the CDC, FDA, etc….
How many cries for help, suicides, dehumanising, patronizing, bulling, and constant living in fear does it take to save the patients with chronic pain.
CDC,FDA, etc….have discarded the “first do no Harm” and caused harm to patients who were following the guidelines. They have taken the patient’s unalienable rights and blantly bullied the physician, hospitals, and health care provider to live in fear of there own liscense to practice “first do no Harm”. Now patients have committed suicide, live in fear 24/7, profound constant pain, no medical help, all medical care taken away, and this is a travisty of injustice. These agencies have created a community of genocide fear.
The CDC,FDA, etc…have collective responsibility for the tragic harm caused on these chronic pain patients.
This just keeps going on and on while medical care is being negligent in helping this community of chronic pain patients and no one in these agencies is putting forth the guidelines to stop this travisty of injustice. Revise the guidelines is only a band-aid on the medical negligence that has been done.
These United States of America have a history of medical travisties. Syphilis study, formula for third world countries, radiation on newborn thyroids. Yet this cruelty continues to be ongoing with the agencies of our country allowing the chronic pain patients to be denied prescribed medical care by there liscensed physician.
The CDC, FDA, etc..has committed the crime of criminal medical negligence in removing the medical care necessary prescribed by a licensed physician.
I have unrelentingly chronic pancreatitis, fibromyalgia, cancer twice, debilitating migraines and now I live in constant fear of my medical care when I followed all the guidelines. I have been judged and sentenced for a crime I didn’t commit. We the chronic pain patients are their collateral damage.

1 month ago

Martha

I believe in multiplicity for treatment but Insurance does not cover these helpful treatments as well as not covering Pain Medication. The real underlying problem is not correctly assessed nor are Chronic Pain Suffers addressed. This is a terrible injustice and misleading information that will kill more Chronic Pain Sufferers than cure addiction for the street drug people. Responsible clinics must not be lumped with street drug dealers. Too bad everything is considered Political now. This is far too important to be used as a Political maneuver. The entire drug world is out of control and overcharging for life saving medications as well as not including medications for people with Chronic Pain. Is there a College for Common Sense?
I know an entire group of people who could benefit from attending.

1 month ago

Deborah Rank

All I can get when I try to do the survey is a survey monkey page saying that the survey is closed and report to the people who had the link. GETTING NOWHERE FAST

1 month ago

Rosalinda Palacios

Thank you for doing this study, It is very important to hear from people who do have serious pain and need certain pain medications. As an example, my husband was in a head-on collision where a truck slammed into him as he was driving. The truck veered into his lane as they were going in opposite directions. The truck driver was drunk. How my husband survived is the miracle. He had his legs amputated and metal bars put in the center of the legs and were re-attached, his girdle was fractured, his arms have metal plates in them, as well as a side of his brain.
I heard your interview on Democracy Now and searched your name on the internet.
My husband cannot survive without pain medication. His doctor is being investigated, the Feds keep harassing the doctor to reduce his patient’s pain medications, and now my husband has to have another hip surgery.
We know friends who are Vietnam War veterans, and many of them injured or now have cancer due to the Agent Orange they were exposed too. They need pain medications as well. My husband is a Vietnam Survivor.
Thank you for your work. Keep doing what you’re doing to speak up for those that truly are in need of the pain medications others became victims to as abusers. Not all pain medication users are abusers!!!
Blessed be. Rosie

1 month ago

Dr. Jed Graham MD

Dr. Lewis I am a physician and a good friend of Dr. Thomas Kline. I have read all of your articles. I use the Palliative care form. I am putting most of my pain patients on palliative care and completing the form. There are very almost not guidelines for diagnosing palliative care for pain.
Both Dr. Kline and I are trying to come up with appropriate documentation in making a patient palliative care. I have many patients that were injured at work and continue to work. In order to keep working they need medication. They all tell me how much Soma helps their spasms.
The guidelines say we should not use muscle relaxers because they have little benefit and increase risk of abuse and misuse. I am a patient advocate as that is my job. I want to use palliative care and I am urgently trying to learn how to use it correctly. I feel like I am inventing the wheel with the help of Dr. Thomas Kline. We are working together and we need your help. Please give us some advice. I read your stuff and you know it well. So let us know if you can be of assistance. I sent your articles to Dr. Kline.
Dr. Jed Graham MD.

2 months ago

Victoria Montie

I don’t see how to take the survey. My husband has been suffering with chronic pain for 15 years with psoriatic arthritis, multiple back fusions and joint replacements. He has a pain pump and also was given Percocet until six months ago when his pain doctor abruptly took the Percocet away. Since then his pain is unbearable in the morning. He lays in bed and sobs. He is growing weaker and more depressed every day. Over the counter meds , Cbd oil, doesn’t help. He can barely walk. Some days just eating or taking a shower is nearly impossible. Whoever is putting these opioid restrictions on physicians need to back off and let the doctors determine what the patients need based on their medical history. The very same doctor who told my husband that chronic pain can shorten his life is now causing him so much suffering that it’s probably going to shorten his life. He’s not gonna be able to make it like this!

2 months ago

cjay

I see these comments but how many of you have taken the survey?

2 months ago

Terri Lewis PhD

Hey folks, all you have to do is complete the survey. I am actively analyzing and updating results as it collects.
It is collecting tremendous information about the conditions that you are dealing with alone or in combination; your symptoms that you battle; the interventions you have tried; and the length of time you’ve been dealing with these things.
Your current pharmacy experience is also really helpful to understand.
Also seeing trends that help to understand the public information – urban/rural, interaction with physicians, influence of state regulations, and so forth.
Keep ’em coming!

2 months ago

Jan

We need help badly. I have pain every day . I get some relief with my medication and can do some things. If my medication is taken away then I might as well just stop living I will be bed bound. My pain is not in my head. So when somebody hurts you are saying the pain is in our heads.
Our pain is real and we deserve to have relief from our pain, its our right.

2 months ago

Mary P Bailey

I’m a chronic pain patient for the last 21 years. I was a passenger in an accident and was that fractured my skull when I flew from the vehicle at 55 miles per hour. It took 6 hours of WIDE AWAKE UNMEDICATED SURGERY to remove all the bone chips from my brain. My face was sliced halfway off and had to be sewn back on without anesthesia. I was told I would die if they gave me anything. After 2 years of daily therapy to get back to a very disabled normal. However, I was left with a completely debilitating level of neuropathic burning pain in every cell of my body! Over time I was put on a whole cocktail of medicine(42 at last count) as well as higher and higher doses of narcotics. I was told there was no upper limit so don’t worry about it. But I did. So i started cutting back on my meds 3 years before the CDC’s “recommendations”. I reached a comfortable level of pain medication that allowed me to participate 3 to 4 days a week in various activities, something i dearly needed once my husband died. After i proactively reduced my medication 75% the CDC decided we had an opioid epidemic mostly composing of fentanyl related deaths when they chose to purchase illegal drugs. I’m now treated like an addict and have had my medication reduced by an additional 90%! I have to pee in a cup and sign my legal rights away just to get a tiny amount that only gets me a 7 pain level. Without it I am hospitalized at a 9 or 10 pain level. I have had to give up all my activities and most of the time i can’t get out of bed for most of the day. I am in a wheelchair due to pain. I can’t cook , clean, shower or participate in my life. I miss half my doctor’s appointments because I can’t function well enough to go. My life is truly a HELL! And when I go to fill my pain meds I have to pay cash of several hundred dollars a month. And I’m on SSI so I only get paid $755 per month to live on! The doctors and drug companies caused this problem but I have to live with the consequences…..

2 months ago

BG Callahan

I have a lengthy report to share regarding a dear friend i met in 2012. She ruined her back falling in DRESS CODE high heels on a dealership parking lot and a city sidewalk in 2003. I have come to be one of her part time amateur caregivers since the CDC forced tapering. Heartbroken. How can I help?

2 months ago

Rehmat Jamal

I’ve been in so much pain that i’ve been knocking myself out and sleeping about 10 hours or more a day since my meds were cut down again only cos I don’t want to feel the pain. Is that a life? Im 59. Will someone please help?

2 months ago

Bruce Stewart

Researcher is right. It’s planned depopulation. Agenda 21. We are the initial group of people to get the ax. The literal garbage that they spray in the sky virtually every day apparently is designed to overtly affect people with neurological issues. I’m so debilitated on a heavy spraying day I can hardly move. On the occasional day they fail to spray over the Las Vegas valley, I feel so much different it’s impossible to describe. I suppose one could bicker about WHAT they’re spraying, but all you have to do is look up to see that they ARE spraying – I’ve found that it’s usually aluminum, cadmium and barium, or some mixture similar to that. Metals. Right on top of us. Just take a soil sample and you will typically find 3000 times the “normal” amount of aluminum in it.
I had my medication cut 25% with no explanation, but thank god they stopped there. Hugs to you, Terri Lewis – we love what you are doing by fighting for us on the front lines of this government tyranny. I filled out the questionnaire. I also used to work for Health and Human Services in DC, fwiw. I used to be normal like everyone else. I wish there was something else I could do. Maybe lobby the local government or state pharmacy board? You have my email address, please let me know. Thanks so much.

2 months ago

csheltri

please tweet Donald trump (google address) and ask for compassionate care for pain patients Everyday! for example: “Mr President please help Americans being tortured by medically unnecessary opioid tapers!” “Mr President, my medication has been out of stock x times in 6 months-please bring sanity to opioid hysteria”

Look up your senator twitter and Facebook accounts as well. This is something you can do from bed!

2 months ago

Researcher

150 Million CPP’s in the US. 3,800 respondents?
The April 2018 meeting with a Dr. And a CPP with CONGRESSIONAL AIDES really changed things.
Even though she had a entire plan to fix the opioid epidemic.
Yet the POTUS is cutting back production of pain meds for the next 3 years, & this reduction has been going on since 2010!
Before the media made up the opioid EPIDEMIC, which is false & easily proved to be so, and TARGETING pain patients.
Getting rid of CPP’s both reduces the population, AND takes monetary burden off the government.
It’s time to face facts. The gov not only doesn’t care, this is PLANNED since 1993. REDUCTION OF POPULATION FOR SUSTAINABILITY.
They aren’t hiding this, it’s clearly written in Agenda 21 on Wikipedia & the original document is even scarier.
Hitler killed the disabled first as well.

I have had chronic pain either from my cystectomy or right inguinal hernia repair. It’s a burning, stinging pain to the right of my stoma, made worse by laying on my back, sitting, and driving. My surgeon and cancer doc have no idea what is the etiology, and nobody wants to do a revision. Have gone through different a meds for nerve pain, injections, radio freq ablation, spinal cord stimulator trial, sacral plexus intervention, etc, all to no avail. The pain severely limits my life, as many of you know, and even our dog suffers due to my inability to take him out much for walks. Vicodin does take the edge off, and allows me to get some sleep, although I do get wild dreams from it. The thought of no realistic alternative, and being cut off from it due to the publicity, adds to my anxiety. Most people like me are not the problem, and it’s ridiculous that we are being punished and looked upon like “lepers” in this day and age. We just want help for our pain.

2 months ago

Jill

I appreciate your continued efforts on behalf of all of dealing with chronic pain during this difficult time. It can’t be an easy task to try and make inroads into this media driven fake opioid crisis. Thank you.

2 months ago

Richard Williams

I was remembering back to when I was younger.I broke my arm and Ive had rotator cuff surgery.Both times the doctor gave me opiodes.At most it was 21 pills with no refills.I didnt even ask for refills because the injury healed.
When I got injured the last time in 06.I was given a 30 day supply that lasted for 3 months for me.
I have herniations in my back and neck.
I still get the 30 day supply that last me 3 months,but because of regulations the doctor wants to take me off.
My overall question is why punish patients in chronic pain because Doctors over prescribed to other patients?

2 months ago

Hallie Villano

filling out this section??? SUICIDES ARE UP AND GROWING, THANKS TO THE GOVERNMENT’S RIDICULOUS DRUG POLICIES VS. THOSE IN CHRONIC PAIN

2 months ago

Hallie V.

joining the discussion …. SUICIDES ARE UP — GUESS WHY?

2 months ago

Hallie Villano

WHY IS THE GOVERNMENT PRACTICING MEDICINE & PHARMACY??? How intrusive of this gov’t on indiidual rights … right to liberty & HAPPINESS. People in chronic pain CANNOT have ANY HAPPINESS … I fear that my husband will take his life … “Why live like this? Why live bed-bound??? IN PAIN ALL THE TIME … WHY GO ON??? This is what I hear in and day out??? AND I HAVE NO LOGICAL ANSWER FOR HIM … Would I go on, in chronic pain, with nothing to look forward to??? How presumtuous of these ‘pencil pushers’ to assume THEY know what chronic pain is/means … do they realize that MANY OF THE RISING SUICIDES ARE RELATED TO not wanting to live in pain, with nothing to live FOR??? WHAT’S THE MATTER WITH THESE PEOPLE??? LET THE PAIN MGMT DOCS DO WHAT THEY WENT TO SCHOOL FOR … LET THE PHARMACISTS DO WHAT THEY WENT TO SCHOOL FOR — put limits (3-part Rx’s like NY has used for years) … The government has made a huge mistake allowing drugs to run rampant …. and they are TRYING TO COVER THEIR MISTAKE BY TAKING IT OUT ON THE CHRONICALLY INJURED … THOSE IN CHRONIC/LEGITIMATE PAIN … WHY WRITE THEM OFF BECAUSE (NOW) SENATOR! MARCIA BLACKBURN TURNED A BLIND EYE TO THE DRUG EPIDEMIC IN TENESSEE WHEN SHE WAS CONGRESSWOMAN … AND THE OTHER ‘GENIUSES’ WHO LET THIS GET TO THIS POINT!!!!! LET THE DOCTORS DECIDE WHO DESERVES PAIN MEDS … USE 3-PART FORMS; OVERSEE THE PRESCRIPTIONS …. TAKING AWAY LEGIMATE MEDS MAKES NOOOOOOO SENSE … THE SUICIDE RATE RISES … AND, DID ANYONE NOTICE THERE’S A HEROIN AND FENTYNAL EPIDEMIC OUT THERE — WHY IS THE FENTYNAL GETTING IN FROM CHINA??? MY HUSBAND’S LIFE IS WORTH MORE … BUT HE CANNOT LIVE IT IN EXCRUTIATING PAIN … THIS COUNTRY IS RIDICULOUS AND THIS CONSERVATIVE APPROACH IS THE WRONG APPROACH — AND COMING TOO LATE.

2 months ago

Thomas Kidd

Just how long are we to suffer without enough pain meds to actually help us function? All I have gotten from my doctor is excuses.

2 months ago

Ali

I’ve had Migraines since 5yo. Being a septagenerian been thru and labeled to the point of exhaustion. I’ve been bullied by physician’s, nurses, and ER physician’s to the point of staying home and having pain to the point of no life. I just need a medication that will help. Doesn’t mean pain medication just medicine that works. Tried acupuncture, exercise, yoga, physical therapy, mood therapy, etc…
Now a septagenerian again being labeled, bullied, and made to try alternate therapy. Bullied into having profound pain while the medical field decides if I’m worthy of there medicine. Again after months of waiting for the decision of the God’s to decide my fate while living 24/7 in fear.
The God’s (medical field government) decides every few years they need to make changes
without any regard of who they clump together in there studies.
I will go to my grave knowing this happens again and again the powers that be making decisions they have no concept about.

2 months ago

Scott Michaels

Terri
PLEASE can you get the survey to scott gottlieb at fda. He is doing a study on long term opioids. Kolodney says they dont work and hes wrong. We gotta figure out a way to shut kolodney down. His lies are causing so much misery. We are the proof gottlieb would need that long term opioid therapy not only works but its a godsend for millions. Unless people want to inflict undo serious pain on out weakest part of society things much change, NOW. THANKS

2 months ago

Lynda Hillebrenner

Terri, you are amazing. Thank you so much for all the hard, time consuming work you do on behalf of those who are unable or not trained to do this. I just wish we could get more responses from our Chronic Pain ppl. I know some as Physically unable to participate, but there are way too many who are effected. I will continue to spread the word. Best wishes

2 months ago

Annell

Wish people who took pills away could be in my body for couple days use to say just 10 mins because don’t want others to suffer!! Well sorry to say I wish they could all suffer!! Not having good day

2 months ago

Annell

Jill couldn’t post where I saw ur post about fatigue but info for u and all I think it was on Amazon lady with PhD did this doc it’s called “unrest” I know this is only part of problem but has info from around world. I myself am over not having pills that will let me live u know cook clean etc few days I have woke up and said oh no! Not again govt could give pills I’m 63 never been addicted to anything!! Before I had these pills used to drink beer after 4 I felt like I could move now I’m so bad can’t sit up that long. Just wish someone would help us live. I’m just tired of this.